It may seem like there are many different issues splitting the autism community—including fights over educational, vocational, residential, medical, and therapeutic services. But these battles really boil down to just one question: Who decides what’s best for those who can’t speak for themselves, the severely autistic individuals who will require upwards of $2.4 million in care over the course of a lifetime? Should it be parents or should it be autistic self-advocates?
For the past four years, I’ve been privileged to work with three Penn colleagues, Matthew McCoy, Emily Liu, and Dominic Sisti, mining literature in bioethics, political philosophy, and history for guidance in crafting a framework that would be helpful in analyzing these debates. In March, our article “Ethical Advocacy Across the Autism Spectrum” was published in The American Journal of Bioethics. In the article, we suggest a new concept, “partial representation” to describe advocacy that is both incomplete and biased—in other words, “when an actor claims to represent a particular group of people, but appropriately engages with only a subset of that group.”
One of our primary examples of partial representation is the Autistic Self Advocacy Network (ASAN), which claims to speak for all autistic people. ASAN has taken several positions—including opposing the use of tracking devices to prevent elopement and supporting the restriction of Medicaid HCBS funding to residential settings no larger than four people—that many parents consider not in the best interests of their severely autistic children and potentially harmful to them. Some self-advocates, in response, have pointed to their shared diagnosis to assert a right to determine the best interests of autistic individuals—including of much more impaired autistic individuals they have never met.
In our paper, we argue that any group that purports to represent the entire autism community is obligated to “actively engage and consult with both autistic people and those closest to autistic people who lack the capacity to participate in decision making themselves.” Admittedly, this is easier said than done.
We also use the example of Autism Speaks, which ASAN has accused of taking the same representative role it claims for itself and speaking for the entire autism community without, on the flip side, inviting the participation of self-advocates. In response to these criticisms, Autism Speaks has tried to broaden its constituency, by adding autistic adults to its board and removing the word “cure” from its mission statement in 2016. But this has done little to appease some self-advocates while alienating some of the parents who were the group’s core supporters.
In my opinion, autism has just become too broad—representing both married college graduates and profoundly intellectually disabled adults who spend their lives in diapers and helmets (to prevent traumatic brain injury from smashing their heads against the wall)—to be fairly represented by one voice.
Which isn’t necessarily a bad thing. As we note in the paper, there may be another solution to partial advocacy besides including all stakeholders: the “moderating [of] representative claims and making it clear that [a group] represents only that constituency with which it is appropriately engaged.” The Global and Regional Asperger Syndrome Partnership (GRASP), for example, has supported individuals with milder forms of autism since 2003.
More recently, The National Council on Severe Autism (NCSA), of which I’m a founding board member, launched in 2019 to represent the other end of the spectrum. Neither group claims to speak for the entire autism community. In our paper, we call this “a federated model of representation where representatives of particular subgroups speak on behalf of their smaller constituency when addressing certain issues but come together with other representatives… to speak as one about issues affecting a broader group of people.”
The problem arises when representatives fail to recognize or acknowledge their own partiality. In the paper, we note some real harms that can result: such partial representatives “can ‘crowd out’ other representatives that might do a better job of adequately representing the groups in question,” either in formal settings, like advisory boards, or informally, “when certain representatives dominate public discourse about the needs of a particular group.” In an era when autism has come to be equated with the “quirky genius” of Sheldon in The Big Bang Theory and Shaun in The Good Doctor, I would argue that this has already occurred.
More importantly, partial representation “can misinform policymakers and the public about the interests of represented groups, leading, in turn, to suboptimal or harmful policies.” This, too, has already happened. ASAN is just one of the Disability Rights organizations that has argued that everyone with an intellectual and/or developmental disability is capable of achieving competitive, minimum-wage employment and living in his or her own apartment. Many states—like Pennsylvania, my state—have tailored their policies accordingly, de-funding the specialized settings required by my son and thousands of other individuals with significant cognitive impairments and dangerous behaviors.
My own takeaway from working on this project? That claims of representation need to be made carefully, with humility and respect for diverse perspectives. And the broader the claim, the more skeptically it should be treated. The fact that the “autism wars” have been raging for two decades over this very question is itself more than enough proof that any claim to speak for every stakeholder is, inevitably, partial.